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Prenatal Testing And Dilemmas of Giving Birth To A Child With Down’s Syndrome!

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Prenatal diagnosis is currently the most widespread application of technology and genetic knowledge. Along with the benefits that advancing technologies provide, they also give birth to new dilemmas. Researchers can now detect many health problems of an unborn child in the womb. While it is a good thing as it helps parents prepare well to receive such a child, this information also creates situations where parents face the wrenching decision of whether they should give birth to the child or terminate the pregnancy. They are left to decide if giving birth to such a child is an injustice to the child.

What about the ethics of prenatal testing, especially in Down syndrome? How do mothers experience the personal and ethical choices about prenatal testing? We should also be looking at the perspective of mothers of children with Down syndrome.

Society believes that it is a grave burden to raise a child with Down syndrome and that it is both medically appropriate and morally correct to take measures to ensure the child is not born. Because of few treatment options, testing is basically linked to the only option of ‘therapeutic’ abortion.

Recently, Gov. Sarah Palin gave birth to a son with Down syndrome. In spite of knowing very well what she is getting into, she announced that it is God’s blessing. This heartwarming pro-life story tells a lot about the woman’s strength and conviction in her capabilities as a woman and a mother.

The family made an announcement: “Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.” This has in a way proven to the world that Sarah Palin is a woman who truly walks the walk.

Trig Palin whose name means “brave victory” is one of the lucky few who got through. The screening tests that alert families in the early stages of the pregnancy cause most children with Down syndrome to be aborted and fewer to be born.

Statistics reveal that a very small percentage of couples continue pregnancies after a diagnosis of Down syndrome through prenatal testing. It is felt that these statistics are mainly the result of decisions made in haste and without adequate information about what Down syndrome is likely to mean for the child or even to themselves as parents.

Mothers worry about the cost of raising a Down syndrome child, about how the child will affect siblings and mainly how the child will cope. In fact, it has been seen that the older the parents are, the more they worry. Who is going to take care of my child when I am not around anymore? How is the child going to get along in this society?

Research shows that a vast majority of doctors are insensitive and push women to make decisions even while they are still reeling from the initial shock over the diagnosis. Women who have terminated their pregnancies say that they went through a lot, including questions about the ethics of termination that continue to haunt them. They also said that they would have kept the child if only they were more aware of things and not gone into panic mode and most of it due to being pushed into taking a decision.

Yes, it is not an easy task and it takes a lot of giving from the parents. As children, even the kids with Down syndrome may have to go through a lot of unpleasantness in the society. If we take the case of six-year-old Benjamin, he knows he is different from the others. His mother says that he gets himself ready in the morning and once when he came downstairs, she said to him, “Oh, look at you! You look so handsome today!” He said, “Mommy I’m not handsome, I’m different.” That, she says broke her heart. But she says that he is a happy child and she cannot think of life without him.

Parents relate stories of adjustment to the news of the child’s disability; compromised dreams and disappointment that gradually are replaced by hopefulness and realization that life continues ordinarily and normally. One mother said, “You don’t wake up every morning thinking “Oh my God, he’s got Down syndrome.” Most women who have a child with Down syndrome say that the child made their life richer and brought a lot of positive changes in their lives.

Interviews with adults with Down’s syndrome show that even as adults they are quite happy with themselves. They insist that their so-called “handicap” is only in the way society looks at them, not in who they are.

One pro-life supporter says, “Years ago, these kids were called mongoloid and they were institutionalized but now we find them with the use of advanced technology and kill them.”

Thousands of stories of surviving the so-called “crisis” and leading more satisfying and happier lives should help both expectant mothers and families understand that the grief and shock that follow a diagnosis are not predictive of the long-term future for them. Researchers challenge the idea that reducing the incidence of Down syndrome through termination is honorable and that people with Down syndrome would be welcomed and seen as valuable members of our community.

It is common and understandable for expectant mothers and fathers to feel anxious about their child. Nevertheless, does the possibility of a child with Down syndrome warrant despair? Is prenatal testing actually reinforcing an unjustifiable fear of disability?

As of now, not many women have an indication of how not horrible this situation is. Until these women are educated on this, they will continue to agonize on deciding to terminate such a pregnancy and even on bringing the child into the world. Either way, a woman has the right to make an informed decision.

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5 comments

Deirdre Morris September 23, 2008 - 4:44 pm

Is prenatal testing actually reinforcing an unjustifiable fear of disability?

I would say so. The very process of testing does suggest that there is something to fear and that there is something ‘wrong’ with Down’s Syndrome (or other ‘disabilities’).

It serves to changes the lenses through which we view the new life. And with a positive result, the baby growing in your womb suddenly tranforms from being a baby to being a condition.

It seems to me that it is this subtle shift in attention that actually causes the despair. When you just focus on the condition, you have lost ‘your baby’.

When we (parents and society) can rememebr that she/he is a baby first….a completely unique gift to the world then we can open up to the adventure that lies ahead.

Nevertheless, the reality is that the idea of Down’s Syndrome or other disability does cause anxiety ( I know I have felt it) even when we can appreciate it as something different rather than something wrong.

But we don’t have to feel despair or fear.

See http://magicalbeginningsforbaby.com/pregnancy-fears-of-downs-syndrome-and-emotional-freedom-technique-eft/ for a recent blogpost that explores this further.

Deirdre Morris
Inspiring Magical Beginnings

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Terri November 4, 2009 - 4:23 pm

When I was pregnant at age thirty, I was given the option to go get a maternal serum test by my doctor. I asked her, “What is this test all about?” She said, “It is to detect the likelihood of your fetus having Downs Syndrome.” I was so naive, I asked her, “Why would I want to know that?” She hemmed and hawed and answered, “It is so you can make a choice of your course of action over the pregnancy and be prepared for what is to come.” She gave me the paper and told me it was up to me if I wanted to get the test done. If it showed positive, then I would be given the option to go for more tests. As I left the doctors that day, I realized what this test was all about. It gave me such a sick feeling in my stomach when I realized the way women (who are already worried about their pregnany to begin with) are sucked into a vicious trap (and it is definately a trap) foisted on them by the medical community that is only there for one reason – use fear to manipulate a perfectly healthy woman into undergoing a search and destroy mission on her fetus. Needless to say, I did not get the test done and my child was perfectly healthy. I am now 38 and if I was to get pregnant again, I would decline all testing. If I am going to give birth to a child that is not perfect, I would rather find that out after birth, not before. If the child has a defect where they wil die after birth, I would rather give birth and have them die a natural death then have them die by my hand – that is something I could not live with. As far as I am concerned, subtly forcing these tests on women without telling them exactly what it all about is a major violation of medical ethics.

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mohd imran April 4, 2010 - 9:19 am

it’s realy a vary good picture of such case.

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yaagoot hassan August 28, 2010 - 6:43 pm

how can people give birth alone???

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Juju Fatah October 28, 2011 - 10:11 pm

This is ridiculous.

This sentence is patently not true:

Researchers challenge the idea that reducing the incidence of Down syndrome through termination is honorable and that people with Down syndrome would be welcomed and seen as valuable members of our community.

No research suggests this. No research indicates this. Down’s Syndrome children are a tremendous burden on their families, both financially and otherwise, and a total loss to society.

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